2008

I recently ran across the term ‘happy autism’ in a book I was reading (which, of course, I’ve now forgotten the title of). Essentially, the author used this term to describe his autistic child, who clearly 1) met all three components of the so-called ‘autism triad’, and 2) was generally very happy and content most of the time.

[Note: I also recently came across the term ‘autism triad’, which is defined nicely by Wikipedia as the three characteristic signs of autism: impairments in social interaction; impairments in communication; and restricted interests and repetitive behavior.]

I have mixed feelings about the term ‘happy autism’, though. On the one hand, it does describe our son very well. He’s definitely autistic, and he’s quite happy, content, and peaceful most of the time.

I think the general public on average assumes that our children are always screaming, breaking things, freaking out over little details, or whatever, and that our lives as parents are miserable black holes devoid of hope. Of course, under a variety of conditions, our children can have a very hard time and our days can sometimes go straight down the toilet, but the reality of our lives is usually quite different than the way things are portrayed in the media and in film and TV. It’s good to have words that help counteract those stereotypes.

On the other hand, the term implies that those who don’t have ‘happy autism’ are unhappy, miserable, or whatever the opposite of that term might be. It’s like with everything that involves putting adjectives and modifiers in front of ‘autism’. For example, we try to categorize it as high-functioning, mild, moderate, or severe, though there are nearly no diagnostic criteria that describe what any of this actually means in real-life terms. We even go back and forth about what is actually ‘on the spectrum’ and what isn’t. And on and on from there.

One of the most important things we can do as parents is to monitor our ‘internal dialogue’ about ourselves and our kids. What I’m calling ‘internal dialogue’ are the things you say silently to yourself or otherwise think about over the course of your day. If you haven’t noticed yourself doing this, you probably will now, and you’ll find you do it a lot.

These things can be worries about the present (“We’re never going to be able to pay these bills.”) or the future (“He’s never going to be in a regular classroom is he?”). Or these can be concerns about your child’s progress (“He still hasn’t figured out how to put two lego blocks together.”) or how she’s falling further behind her peers (“Our neighbor’s son is now speaking in paragraphs, but she’s still barely using one word at a time.”) As you listen to your internal thoughts, you’ll hear these and countless other kinds of things going through your head.

The key here is that much of what goes through our minds during the day isn’t very positive. When things are difficult, this is just how it often goes. As a result, the weight of all this can make managing things that much more difficult, plus it makes it nearly impossible to maintain your perspective on life, your family, and your child. You know you need to marshall every bit of energy and drive that you can to do what your child needs you to do.

Here’s about the best and quickest way I’ve found to regroup, focus on some positives, and reset your perspective. You may think at first that this sounds a bit contrived, but to me it works. Plus it has made a big difference in my life.

What is it? Write down your concerns about your child or yourself and start rephrasing those statements as strengths.

Here are some examples of concerns and then one idea for how to rephrase them. Obviously, you’ll need to come up with your own and the way to rewrite them that works for you.

We did the usual filming-your-kid-coming-in-to-see-what’s-under-the-tree thing this morning. The J-Man clearly could not have cared less. The film is primarily about him searching for breakfast.

His plans for celebrating today were clear – go grab his toast, drag both of us over to the couch, climb in between us, and eat. When he finished his toast, he put his head on my shoulder and smiled, completely ignoring everything under the tree until he was ready to get up from the couch. It’s clear who the teacher is around here these days.

As I talk to other parents who are making their final preparations for Christmas, it reminds me that in our family, we are writing our own story. J-Man seems to have little – if any – understanding of what Christmas is, why there’s a tree in our living room with white lights on it (though he digs it a lot), why people give him stuff he’s never seen before and why we ask him to pull paper off of them in the first place.

We can buy presents with him in the store with us and put them out in full view under the tree for a week and he doesn’t care one way or the other. There’s no going to tell Santa – or even us – what he wants for Christmas. There’s no searching all over the house for gifts we’ve hidden. There’s no singing along to Christmas carols. There’s no, “How many days until Christmas, Daddy?” or “Is it Christmas Eve yet, Daddy?” Tomorrow will likely be like any other day for him.

I would be lying if I said I didn’t feel sadness about this. And I would be lying if I said that there isn’t a part of me that wishes we could share those things together.

But one thing he’s taught us to remember is that Christmas really has little to do with any of those things. Because of him, I’ve come to finally get deep down that Christmas is about hope coming in the unlikeliest of circumstances.

I am not normally one to wax religious on this blog, but whether this story is part of your beliefs or not, I think it speaks to a fundamental desire in all of us to be able to believe that something incredible can come even from the last place you’d ever expect. Given the transformation of human history that would follow, it was not how you would have expected this child’s story to begin 2,000 years ago.

But by retelling it every year, we learn and re-learn that out of the humblest beginnings can arise something beyond anyone’s furthest imagination. We are reminded that hope and grace can bloom and thrive in places many people would never think to look, and even from places where people consciously decide that nothing of worth could possibly come.

This is why the story of Christmas means so much more to me now. Our family’s story did not begin as we expected it to, but we’ve discovered that uncertain beginnings are not permanent obstacles. They instead take us on a journey that transforms us as parents every day and brings goodness and light into our little community in the world. And who can even know where it might take us next.

The entire season of Advent is one of waiting and hoping, imagination and expectation. We discover that it’s not just for one day but that every day brings with it untold possibilities. In a little over four months, our second child will join us, and we’ll begin the next chapter of this great, unpredictable, exciting adventure we’re on. Meanwhile, we wait, with no small amount of uncertainty, but also no shortage of joy and hope.

All we know right now is that we have a little light and some rough directions and little else to go by except a driving sense of trust and belief that if we travel as far and as long as it takes to get there, we will discover things beyond our every hope.

In our Christmas story, the child stacks blocks and arranges crayons and never takes a step without two of something in his hands. The donkeys, cows, and sheep are packed away unnoticed in the corner. He swaddles himself in pillows for comfort. And then in an unexpected moment, he glances up in a temporary moment of peace as if to say, It’s time to go write a new story; go get my crayons.

Well, THAT Mary didn’t get the benefit of an ultrasound, but ours did! They wanted to get a better look at the heart (significant family history of heart issues) and confirm that a cyst in the brain we didn’t actually know about (but that apparently are common and go away in most cases) was indeed gone. Everything checked out great! Woo hoo. Between that and a ‘clean’ amnio, we got a great Christmas present.

I can already tell this is going to be a challenging break from school. The J-Man spent much of his day finding various ways to stim. Clearly being away from the structure of school did not sit well with him, even though last week you could tell he was really ready for a break from the rigors of school. Left to what would seem to be a more relaxed schedule, he instead couldn’t figure out what to do with himself except run around, make seemingly random noises, and stim much of the day. It didn’t help that it was so dang cold today that we couldn’t go out.

The reality is, there’s no way we can recreate at home the rigorous structure of his classroom. Clearly I underestimated what we need to do over the break, though. All day you could tell he needed something, and relaxing to Signing Time or The Wonder Pets or me walking around with him singing songs wasn’t nearly enough to help him regroup. He didn’t melt down or anything, but he just looked lost, disoriented, or sometimes generally unable to intentionally decide what he wanted to do next. He just went into random mode sometimes.

His stimming was way more in effect today than usual. Most of his regular stimming involves flapping his hands and arms, running around while doing the ‘stim dance’ (you’d have to see it to understand it), banging his fists together (like a very dramatic version of signing ‘more’, which is not what he’s actually doing there), banging blocks together, clapping his hands forcefully, or – and my least favorite – rapping his fist on the top of his head. It doesn’t seem like he’s hitting his head hard enough with his fist to cause much discomfort, though. He’s not pounding his head, just sort of ‘knocking’ on it like you might a door.

Yesterday was our last day at school for about 5 1/2 weeks, so we had a holiday, ornament-making party to celebrate. Admittedly, though, most of the parents aren’t feeling all that celebratory about the prospect of having to do all the structured learning and therapy work on our own at home until the end of […]

I’m still so impressed they got him to sit and pose and sorta smile for a school picture. We haven’t had a professional portrait done in at least a year and a half due to all the meltdowns we’ve had before. The special ed teachers at school basically tell the photographer to stand there with […]